Thursday, December 30, 2010
I am calling out the lab this time. LabCorp in Lansdowne lost our first stool sample. A large bag filled with 7 containers, one envelope and lab order forms, were all lost without apology or explanation.
Second time I drop them off and hand the stool sample to the exact same people. A week later, we get most of the results back. Brayden's pancreas is not working properly, he is not absorbing food...thus a plausible reason he is not gaining weight/losing weight.
I get a phone call for the doctor's office. The remainder of the lab tests were done incorrectly. They froze samples that were not supposed to be frozen and did not freeze the ones that needed to be. Then the lab tried to say that the patient did it wrong! We do not do any freezing at home, we collect and hand it over to the lab.
We have to collect stools samples again...not as many and we are taking them to a different lab. And I am making phone calls to complain about LabCorp.
We are also waiting for the GI doctor to decide about the pancreatic enzymes. The doctor is currently at the hospital for the week and getting back to us next week. The pancreatic enzymes should help with food absorption. The question is what to give since Brayden only takes things by J-tube, into his intestine, which is different than going into his stomach.
Time is ticking by. Brayden is not gaining weight and the big appointment to decide about the keto diet is in early February.
Wednesday, December 29, 2010
We all loaded into the car; Carter, Luke, Brayden, his nurse and me. Off to a newer theater with very comfortable seating and nice places to park wheelchairs. Snacks and drinks for the crew and we nestled in for the movie. The theater room was cold...like heat not working cold. Luke and I ran out to the bathroom during the movie and lobby was warm, back in the theater, very cold. Everyone keep their winter coats on and Brayden did too, with a blanket over top.
After the movie, I kindly spoke to the manager. He tried to tell me that the theaters were all set to 72 degrees. I politely disagreed with him and encouraged him walk into the theater himself to feel the difference. I explained to him (very nicely) that I tried to treat my children to a fun day at the movies and they did enjoy the show but we all were cold and Brayden did not control his body temperature well and was concerned about him.
The manager disappeared, spoke to the teenager that walks the theater during the shows and came back to tell me that the staff did notice the room was cold. Then he handed me free movie tickets.
Little did I know that was the least of my worries. I run out to start the car and realize my tire it flat again. I am about 40 minutes from home. This little town center is new and no gas station yet. I called Jeremy, then I called AAA. I have everyone in the car. Brayden was just hanging out in the car seat and the boys were playing their DSi. We waited about 30 minutes when the first AAA guy arrived. He could not handle our type of tires because they were 24s and speciality...he did not have the right equipment. He left us and we waited for either a tow truck with a cab big enough for all of us or a person equipped for our tires. We waited another hour. Finally the AAA man arrived, jacked up the car (with the boys inside) and put on the spare. Problem is the spare is smaller than the other tires. The busted tire was put in the back of the car because he was not sure it would fit properly in the spare space. Where to put Brayden's wheelchair now? Half of the wheelchair, on top of the busted tire; half, in the front passenger seat. A few hours into this tire ordeal.
While all of this was taking place I was calling around to the place we purchased the tires, trying to find one of their locations close to us. They assured me that any of their locations could take care of us.
I delicately drove my car to the car shop. Upon arrival they tell me that they cannot service wheels that size...umm you sold us those tires!? Then tell me that I should not drive my car around because the different size spare can do some serious damage.
Trying not to freak out on them, I ask for their help in finding a place close by that could. A few miles away, a different tire shop. I get back in the car with my crew (thankfully all still pretty calm) and head to the next shop. We arrive and there is NO place to park.
I pull up right in front of the door. I walk inside and immediately I am scolded and told to move my car. I grasp the counter and with all my strength, try to nicely say, "I am hours into a car ordeal. First AAA guy could do our tires, so we wait for the next guy. Finally get a spare, then the place we bought our tires cannot service us and now we are here. I am driving around a car that I should not drive and I have my three little children in the car, one who requires a wheelchair and my son's nurse is with us too. I need someone else to move my car."
We all unload and someone moves my car. We walk next door to a restaurant, eat and park ourselves for about an hour when I get a call from the tire shop. The wheel and tire are beyond repair. I was told I could drive my car on the spare but only home and back when the new wheels and tire are ready.
We left the house about 10:00 a.m. for a movie. We arrived home about 5:00, saw a movie, lots of car repair people, with a car I cannot drive. The boys all made it through the car chaos. Brayden was on his best behavior (the day before and the day after he spent screaming), thank goodness.
Looking forward to some "quality" days at home, waiting for the call we can bring the car in for the new rim and tire.
Saturday, December 25, 2010
I insisted that Brayden was going to participate in opening his presents. So after his rest time we put him in his chair with the tray and started with the presents. A couple of gifts, he was concentrating on looking at them. He did really well. And wished everyone a Merry Christmas with his switch.
After presents, it was time for dinner. Brayden tried to sit at the kids table but apparently he did not care for their chaos but he started crying and once we moved him to another table, he stopped.
For more Christmas fun, check out the family blog.
Friday, December 24, 2010
By the afternoon we were all at Jeremy's parent's home for food, fellowship and presents.
Brayden makes it through the dinner, singing, gifts and chaos without much a complaint.
Thursday, December 23, 2010
Brayden made it through the entire adventure, seemingly enjoying it all. Although he did try to catch a few little naps here and there...with his new friend the Grinch.
The majority of the results are back. It is clear that Brayden is not absorbing food because his pancreas is not working properly. Pancreatic enzymes should be above 200 and below 100 is severe insufficiency. Brayden's came back at 102.
It seems as though Brayden's pancreas works in some ways but not others. His blood sugar is always within the normal range (we check it at home regularly because of the ketogenic diet). But the enzymes used to break down and absorb food are not.
What does this mean?
The simple answer is to give Brayden pancreatic enzymes. I am guessing that this is something we can give like medication or add to his food. The GI doctor is back in the office next week and we will talk to him about the next steps.
Brayden's pancreas will continue to be watched carefully. The stool sample provided a baseline and we can start comparing. We hope that the pancreas is not progressively getting worse and that the enzymes will help Brayden absorb food properly (or at least better) so that he can start gaining weight.
Brayden's next appointment with the ketogenic clinic is in early February...we have until then to figure it out, get him gaining weight...otherwise they will start taking him off the ketogenic diet (which we do not want because it has been amazing for his seizure control).
Wednesday, December 22, 2010
Here is Brayden's gift list...we give a gift to:
2 morning bus drivers
1 Occupational Therapist
1 Physical Therapist
1 Vision Therapist
1 Speech Therapist
2 afternoon bus drivers
and of course his nurse (but her present is not ready yet)
we also send in a gift to one of Brayden's doctors and her nurse because they are always there for us.
Each person takes such good care of Brayden and helps him in so many ways...a little Christmas gift is the least we could do.
While at school, Brayden was in his stander, using his switch to turn on Christmas lights and Christmas music and apparently doing great with it all. Once he turned the music on, another little boy in the class would start dancing. I heard it was adorable!
Brayden has also been working hard on his Christmas present for mommy and daddy. It is sitting under the tree waiting for Christmas morning.
Friday, December 17, 2010
Thursday, December 16, 2010
Monday, December 13, 2010
Sunday, December 12, 2010
This is our Sunday routine.
Brayden is not a fan. We are not sure why.
Our church moved into a new building at the end of the summer. Since that time, I have made it into the sanctuary to hear the sermon 2 times (we are there every weekend). The moment we get in the car and start heading to church, Brayden starts fussing. By the time we arrive at church he is screaming. Once Brayden kicks it into "that" gear, there is little that we can do to calm him. He has been doing this EVERY Sunday, since August (except once or twice).
We do not leave church, Carter and Luke are having a good time. Jeremy and I both volunteer in different programs. We just keep assuming that Brayden will adjust.
Church is a relatively quiet place...not a place for a screaming toddler. Many a Sundays you could find Jeremy or I pacing the halls, pushing Brayden around in his wheelchair. Or bouncing him in our lap, praying that he would calm down or just go to sleep. Or you may see us sitting in the car with him while church is going on. Or you might see him in the car, windows rolled down and me sitting on the bench nearby (sitting in the car with a screaming child is torture).
Yes, Brayden has his moments on other days, it just seems to heightened on Sunday.
It has been frustrating. I have felt on the verge of tears or screaming several times. I feel terrible for Brayden, not knowing how to help him...also trying not to disrupt Carter and Luke either.
I must admit that I almost flipped out on an innocent mom a few weeks ago. She politely told me that serving in the Children's ministry once a month was just too much for her, that she rather be in the service with her husband. Missing church once a month was just too hard for them.
In my head I was screaming, REALLY?! You are complaining about once a month and that is serving to help in YOUR child's room!
Outwardly, I tried my best to be kind, after all she did not know my situation and I did not want to take out my frustration on her. I told her we would figure something out that worked for her family...while I think I was grinding my teeth trying to be kind.
Determined not to alter our Sunday as a family, we continue to go to church, praying that Brayden will adjust. Today, my father-in-law graciously sat with Brayden, paced the halls and held him, while Jeremy and I could sit and listen to the service together...it was nice. I have now made it 3x to hear the sermon.
Friday, December 10, 2010
We have to collect poo again.
Early today, Brayden saw his neurologist. No surprise, Brayden has lost weight since the last visit. The doctor is willing to let us explore the pancreas before changing Brayden's ketogenic diet (for seizure control). The surprise was that Brayden's head was measuring smaller. The doctor measured 4x to check, to make sure she did not make a mistake. Then checked the Children's database from his other appointments in the past year. Yes, the measurement was definitely smaller at 41.5 cm. What does that mean? The neurologists said maybe he is loosing brain matter (something degenerative)...it could be a loss of weight that could make his head slim down...his head could of changed shape. His head will be measured regularly to see what happens.
Brayden's already small head is getting smaller?
Thursday, December 9, 2010
Tuesday, December 7, 2010
We exchanged hellos and quick updates on our lives. They asked about the boys, their ages, etc. I did not know how (or if) to share about Brayden. There he was, my 3 1/2 year old boy, laying limp in the jogging stroller. They asked about him. I never know what to share, how much to share...not wanting to overwhelm someone with details but still trying to explain.
Friday, December 3, 2010
Thursday, December 2, 2010
Tuesday, November 30, 2010
- Woke up Brayden to get him ready for school, about a 45-60 minute process to have him loaded on the bus by 7:10 a.m. Just as the bus is pulling up, Brayden has a dirty diaper...unbuckle all of his chair. Attempt to change his diaper without completely taking off his pants because then I would have to take off his shoes and AFOs.
- Then get Carter off to school. Get Luke ready for the day, he goes to kindergarten in the afternoon so he is usually stuck with me running errands with me in the morning.
- Officially out the door and head to the pediatrician's office to drop off some stuff and pick up paperwork for Brayden. Talk to the pediatrician for a bit.
- Then drive to the lab to pick up our "poo collecting kit".
- Drive back to Waterford for Luke to catch the bus.
- Clean Brayden's linens from the morning's explosive diaper, scrubbing, soaking (and considering what can be tossed out)
- Get Brayden off the bus, into bed, suction stomach for 20 minutes, flushing tubes, changing, etc.
- On the phone for awhile trying to set up appointments, without success
- Brayden's feeding supplies are delivered. The glass bottles are broken and leaked all over everything. The broken bottles are his Microlipids (little jars of fat), the leakage over everything left a greasy film. Have to let those be for a moment.
- Head to the bus stop to pick up Carter and Luke.
- Homework time with Carter and Luke.
- Back to cleaning up the feeding supplies. Spread all the supplies out on the counter top and rinse them in the sink and use cleaning supplies to get off the greasy film.
- Calling the medical supply company to report the broken bottles and order more. First person on the phone transferred me, next person transferred me and then I was told to call the local branch...start all over...transfer, transfer and finally talk to someone. They will replace the broken bottles (I am thinking that they need to supply a person to come clean up the mess).
- Back to the laundry, one more scrub and wash, hoping Brayden's linens come clean.
- Wait, dinner, I need to make dinner.
- Eat dinner, clean up.
- Get Brayden ready for bed, then Carter and Luke.
- Load things up for school the following day.
- Crash in front of the TV.
That does not even include the seizures, a bit of vomit, several diaper changes, several times a day of flushing his tube, carrying him up and down the stairs, propping him in bed or getting him situated in his chair, hooking up his feeding,...
Start all over again the next day.
Sunday, November 28, 2010
George's face lights up and plays soft lullabies.
Friday, November 26, 2010
Jeremy left for the morning around 5:00 a.m., I was awake. Then I realized Brayden was wide awake. I got a shower, packed a breakfast for the car, loaded up Brayden's feeding pump for the day, suctioned Brayden's stomach, gave him all his medications, changed and dressed him, printed out more store coupons, woke up Carter and Luke, dressed them, convinced them they could handle shopping because every store we made it through they could have a piece of candy, loaded everyone in the car (almost, had to head back to Brayden's room for a dirty diaper change...at least it happened at home and not the stores) and we headed to the mall all by 6:00 a.m.
Thursday, November 25, 2010
Tuesday, November 23, 2010
Sunday, November 21, 2010
This is a problem. As I said before, if Brayden does not gain weight, he may be pulled off the ketogenic diet. The ketogenic diet has been life changing for his seizure control.
Trying to figure out why he is not gaining weight has been a puzzle, despite increasing his calories several times. We have noticed that Brayden has been having 2-3 bowel movements a day, some days even 4-5. Several times it is quite oily (I know this is too much information about poo).
I called the pediatrician to talk about it. She immediately said pancreas. I asked her to call Brayden's GI doctor. The pediatrician talked to the GI doctor and I talked to both of them again, as well as the nutritionist.
Brayden technically has chronic pancreatitis. His lipase levels vary from high to extremely high but there have been no other problems. The pancreas sends out enzymes that help breakdown carbs, proteins and fats for digestion and absorption. If Brayden's pancreas is not working properly, then it may be a problem of his body not absorbing the food.
What does all that mean? I am not sure yet. Two things that we are looking into is collecting stool samples over a three day period (fun, right? do I have volunteers?). I am waiting to get the lab orders to find out exactly how they want to do it. The GI doctor is looking into giving Brayden pancreatic enzymes, which apparently are hard to do via a j-tube.
Gaining weight is needed and properly working pancreas is needed...
Friday, November 19, 2010
Wednesday, November 17, 2010
Tuesday, November 16, 2010
Monday, November 15, 2010
We started out to church. By the time we arrived at church, Brayden was not happy. Screaming, not just crying but SCREAMING, no matter what we tried. Jeremy and I took turns. Carter and Luke were enjoying their classes so we did not bother them. Jeremy sat with Brayden, I walked with Brayden...it started to feel like we were getting those looks like "This is church, can you keep you child quiet?" Believe me, we were trying. Jeremy finally gave up and sat in the car with Brayden, who was still screaming.
There are few things more exhausting than a screaming, inconsolable child who cannot tell you why they are so upset.
After our attempt at church, we went to grab a quick bit to eat. Brayden was still screaming on and off. He made his face red from crying and screaming so much. But he would dose off for a few minutes and then wake back up crying.
We made it home. Brayden straight to his bed. Jeremy asked how I was doing. My reply, "Brayden is one more scream away from his first ever spanking." (disclaimer: I would NEVER spank Brayden).
Brayden was exhausted and settled into his bed.
Wait, the day is not over.
Carter had his football team party. Jeremy and Luke had other plans so Brayden and I joined Carter at his party.
I arrived at the sports center, the location of the party. A friend offered to help me get Brayden inside. I said to him, "Thanks but I was relieved to see that there were no stairs into the facility so getting Brayden in will be no problem." I proceeded to unload Brayden and the food for the potluck.
The friend came back outside, he said, "Well, there are stairs. There is a huge flight of stairs up to the party room and no elevator. But I can help you get him up there."
Brayden's chair is a bit heavy and awkward to carry up a flight of stairs. So I carried Brayden, attached to his feeding pump and guys carried his wheelchair. Another gentleman came up to help and asked, "Wouldn't it be easier if we collapsed it before carrying it?" My reply, "Oh, if only I could but it is a full-on wheelchair." After the party, a couple of guys helped carry it back down.
I was grateful for the help but sometimes it is hard and feels like you inconvenience those around you when needing the help.
Thankfully Brayden was quiet for most of the party...he saved his crying/screaming for the car ride home. I was just tired by the time I got home. Simple tasks, that we do all the time, can become oh so difficult.
Wednesday, November 10, 2010
Then Brayden was off to bed. Shortly after tucking him in for the night, he started vomiting. I dashed into his room. As he was vomiting, he was pooping and it was oozing out the diaper. I did not know which end to deal with first. I shouted for Jeremy and he came running in. We cleaned him up, changed the sheets, and tucked him in for the night.
I woke this morning a little before 6:00 and, as always, I checked on Brayden first thing. Before I got to his room, I could smell it...a big, bad diaper. I found that he had vomited again and was laying in a dirty diaper that had leaked out and completely covered one of his legs (can you hear me dry-heaving?). I start the bath and start stripping Brayden, trying not to get the poo anywhere else.
Once he was clean, I started cleaning his bed. Clean sheets on, I placed him in bed and proceeded to give him all of his medications. Only one goes into his stomach (g-tube), all others into his intestine (j-tube). Once the medication for his stomach was in, he started vomiting, requiring yet another wardrobe and linens change.
Now he is just laying on a blanket, with an undershirt. I am running the laundry.
Brayden is NOT sick. The vomiting is rearing its ugly head again. It has been back, on and off for a couple of months. The past two weeks it has really picked up. On Sunday he vomited 8 times. The explosive diapers...well that is just how he does it since he is on an all liquid diet.
The pitful thing is that he does not cry about the vomiting or the dirty diaper. He just lays in it until we find him. He only starts fussing when getting dressed.
Off to get Brayden clean linens...
Tuesday, November 9, 2010
Jeremy and I actually said, "Let's have a family dinner, finally."
That did not happen.
Late in the afternoon, I went to check on Brayden to see if he was still napping. I found him with his body contorted and eyes rolled back. He was seizing and this was not his typical daily seizure, it was something bigger. Carter and Luke had some friends over, I quickly sent them home. Rushed back to Brayden who was still seizing. I grabbed the Diastat, gave him the med, frantically called Jeremy and we decided to call 911. Carter and Luke ran over to a neighbor's house and I rushed around gathering Brayden's things while waiting for the ambulance.
The EMTs arrived, thankfully some guys that have been to our house before. Brayden was starting to come out of the seizure but he eyes were still rolling back. They loaded him into the ambulance and we headed to the hospital.
By the time we arrived at the hospital, Brayden has completely come out of the seizure and was just drowsy from the Diastat.
The ER doctor, whom we knew from previous visits, as well as nurses, greeted us when we arrived. It was decided just to watch Brayden for a bit to make sure he did not go back into the seizure.
Thankfully he did not. We were in and out of the ER in a couple of hours (perhaps Brayden's record time).
Jeremy and I sat in the ER watching Brayden...being entertained by a phone call from a friend who was trapped on his roof after his dog knocked down the ladder (he is fine) and Jeremy's sister, a nurse at the hospital, with, as always, enlightening and entertaining stories.
Brayden was looking good and we headed home. Carter and Luke eventually made it to Jeremy's parents house for dinner and they met us back at home.
Tonight, we are trying to have a family dinner.
Sunday, November 7, 2010
This past week he heard us talking about Helen Keller, about Brayden going to the doctor and needing to gain weight, amongst many other things, this is how it came out of his mouth:
Luke, "Brayden is going to the doctor today?"
Me, "Yes, so daddy will get you at the bus stop."
Luke, "Brayden needs to go to the doctor so he can get bigger."
Me, "That is one of the things we are trying to figure out."
Luke, "He needs to great bigger so he can talk to me."
Me, "Oh buddy, even if Brayden gets bigger he is not going to talk like you and I do. Like we talked about, some people have to learn how to talk in different ways."
Luke, "Maybe Brayden will talk like me when he gets bigger."
Me, "God has a different plan for Brayden. A plan that will be learning different ways to communicate and we will help him figure that out."
Luke, with a big sigh, "Well, that plan is NOT working."
He is trying to understand Brayden. He loves him dearly and wants to be a big brother to him. He is slowly navigating that role and interpreting how it fits into his life...as are we.
Thursday, November 4, 2010
Upon arrival, the parking lot was full. We were directed to park in the taxi/bus drop off. Unloaded and headed into the hospital.
Go to the lab.
The lab tech for Children's recognized Brayden and remembered that he was a difficult stick (the last blood work was with her and did not go smoothly). She did not even try this time and immediately got the head honcho to come get Brayden's blood work.
Next stop the keto clinic.
A few things to do at the clinic. First the dreaded weigh in...and no surprise Brayden has lost weight. Next, meet with the neurologist heading up the keto clinic. Finally talk with the nutritionist.
How did things go?
Brayden's seizure control is great. The best it has ever been.
Brayden's ketones and blood sugar are not where they need to be.
Brayden's weight is slowing falling off the growth chart.
Brayden has to gain weight otherwise, he may be pulled off the keto diet. We do not want him off the diet, it has been life changing for his seizure control. We are tweaking his food (a formula mixture of Elecare, Ross Carb-free, Microlipids, NanoVM and Water) to get in ALL of the calories at a flowrate his body can tolerate.
We have been trying to increase the amount of formula for his intake per day but the increase has been causing him to vomit more frequently.
Don't be fooled by his chunky cheeks, he is really a skinny little guy.